Administration and Leadership, Cardiac & Resuscitation

Celebrating and Supporting Survivors of Sudden Cardiac Arrest

Gene Johnson knows the importance of the chain of survival. When he collapsed in front of his New Brighton, Minn., home on Sept. 11, 2002, his wife called 911; within a few minutes, police arrived and started CPR and attached an automated external defibrillator (AED). After two shocks, Gene regained a pulse and was taken to the hospital, where he had quadruple bypass surgery. After that event, Gene—a retired schoolteacher— became a vocal advocate for sudden cardiac arrest (SCA) awareness. With some neighbors, he organized a “Have a Heart Walk” to raise money to purchase AEDs for his community.

Gene is still working to spread the word about the importance of having AEDs readily available. “I was born again to be Mr. Defibrillator, I guess,” he said. Gene also helped found the Minnesota SCA Survivors group, which provides support to survivors and also advocates for awareness and laws to improve survival from cardiac arrest.

Survival Stories

We’ve all experienced a moment when we realize that one small link in a chain of events could change the course of our lives. That’s how survivors like Gene feel every day—only for them, that small link was the difference between life and death. They wear their survival stories like badges of honor and relay them to others with revelations of what could have been. They recognize the subtle differences that ensured their stories were those of survival, not sadness

Survival from SCA has historically been a rare event and often bystanders, first responders and EMS didn’t know if patients survived, and usually assumed they hadn’t. However, as we’ve seen improvements in survival rates, we’ve recognized the importance of celebrating these successes and how it impacts community awareness and quality of care at all levels of response.

Partners in the HeartRescue Project have stepped up their efforts to reach out to cardiac arrest survivors and their families through survivor celebrations, ongoing survivor support and advocacy to raise awareness of cardiac arrest in the community.

Celebrating Second Chances

Connecting survivors with their rescuers through celebrations to recognize this lifechanging event has a significant impact on everyone involved. For the healthcare providers who helped save the survivor, seeing that person alive and well makes the successful resuscitation more than just a statistic. They see the actual outcome of their hard work in a very touching and personal way.

Meeting a patient after a life-or-death event is invigorating, motivating and gratifying. It’s not simply a chance to celebrate the occasion, but a part of the quality improvement process that reinforces the importance of high-quality, team-oriented patient care. Sometimes, meeting survivors also inspires EMS providers to update local protocols to match the latest evidence, teach bystanders how to perform CPR or institute new training programs.

For survivors and their families, a celebration gives them a chance to meet and thank the EMS and hospital personnel involved in their care. Cardiac arrest survivors often remember nothing about the incident—and they certainly don’t recall the events that took place while they were unconscious. Meeting the rescuers often fills in the gaps so they can have a clearer picture of what happened.

These survivor events can also afford survivors the opportunity to meet other survivors and to share stories and common experiences. Knowing they’re not alone can be very important to survivors and their families. Many feel isolated and struggle to deal with their “new reality” following a cardiac arrest. Connecting survivors with each other can be the beginning of a very important support network.

Celebrating cardiac arrest survivors also raises awareness in the community about the importance of the cardiac arrest response continuum—from telecommunicator CPR, public defibrillator programs and emergency services to hospital care and cardiac rehabilitation. These celebrations can highlight a community’s success and maybe shed light on areas where improvements can still be made. In Spokane, Wash., we recently celebrated the actions of a bystander who performed CPR at a public event. At the celebration we were able to facilitate a reunion and hear the event from the viewpoint of the bystander, and we also learned that the public facility where the cardiac arrest took place didn’t have an AED. Consequently, this resulted in efforts to get an AED and CPR training at the facility.

Survivor celebrations can be implemented in a variety of ways. Smaller recognition events can be just as valuable as larger venues with several survivors. In Minnesota, the Allina Health Heart Safe Communities program hosts an annual survivor dinner. This event includes survivors from the Allina Health system as well as the Minnesota SCA Survivors Network, rescuers, physicians and advocates. The dinner recognizes recent SCA saves but also serves as an overall celebration of life. The evening concludes with a “re-birthday” cake and the singing of “Happy Re-Birthday” to honor survivors’ second chance at life. The event also leads to open discussion among survivors, who are able to voluntarily share their contact information with the survivor network and other advocacy groups. The dinner in 2014 included more than 45 survivors and their families.

“I wanted to tell you how much I enjoyed the survivor’s party! It’s nice to know there are people like me out there,” one cardiac arrest survivor said after attending his first celebration. “It actually raised as many questions as it answered. I’m shocked at how much I should have been told (or given a sheet of FAQs) when I checked out [of the hospital].”

Survivors Helping Survivors

The impact of surviving a cardiac arrest has been found to have significant neuropsychological changes. Most survivors receive very little mental status testing prior to returning home, as a large part of the discharge instructions deal with the major changes to lifestyle, medications and procedure follow-up and care.

Studies have shown that about half of cardiac arrest survivors have some type of adjustment or panic disorder, or suffer from major depression.1 Very little work has been done on understanding their long-term health, but with increasing numbers of survivors with good cerebral performance, resources need to be directed toward providing them with the support they need.

The Minnesota SCA Survivors Network connects recent survivors with mentors, and the network holds meetings every other month to discuss activities and connect with new survivors. Mentors reach out to newer survivors to discuss concerns, answer questions and help them engage in activities that will provide them with connections and support. This type of mentorship program has been extremely successful and has encouraged a strong speakers group that’s willing to visit schools, businesses and EMS training sessions to tell their stories and discuss the importance of CPR and AEDs. Nothing matches the impact that a survivor makes after telling a group of young people about “being dead” and how critical CPR was to her survival.

Another way to engage SCA survivors is to form a support group. Many survivors struggle with feelings of isolation, guilt, anxiety and depression. A survivor support group can be a safe place to express and validate these feelings and to learn there are others going through the same thing. There is strength and comfort in numbers.

“I feel sorry for those survivors … who can’t find the time to attend these meetings or don’t think they’re necessary,” one member of a survivor support group said. “What a wonderful place to find one isn’t alone on their own ‘special’ journey.”

Support groups aren’t just for survivors, but also for their families. Family members often struggle with some of the same questions and anxieties following SCA.

“When we meet with our group we feel free to discuss any issue we have,” said the wife of a survivor. “Before meeting with our group I didn’t know what Bob was going through was part of his heart event. Now I’m able to deal with it. Bob feels he can express himself freely with this group and they understand.”

Advocating from the Heart

Survivors from SCA are strong advocates in supporting and creating change at both a local and state level. When a survivor addresses the importance of CPR and AEDs, local officials and stakeholders become more engaged. Members of the Minnesota SCA Survivors Network have been the catalyst in driving “Heart Safe Community” designations in their own communities. After a Heart Safe Community has earned enough points (or “heartbeats”) for SCA preparedness, the community is recognized at the state level.

In Minnesota, survivors stand out in bright orange shirts they wear whenever they’re teaching, attending events or advocating for cardiac arrest awareness. The senators and representatives at the Minnesota Capitol refer to them as the “orange shirt guys.” These survivors and advocates have been key to the successful enactment of laws requiring AEDs in Minnesota State Patrol vehicles, CPR education in schools and registration of AEDs to ensure they’re maintained and their locations recorded. An active network of vocal survivors and their families helped make cardiac care a priority for Minnesota legislators.

SCA is a life-changing event, one that impacts the individual and their family, EMS responders and other healthcare providers, and the community. Connecting survivors to other stakeholders—from the general public to the EMTs who treated them to other survivors—is not only rewarding for everyone involved, but is also a valuable asset to efforts to improve systems of cardiac care.

Cardiac arrest survivors are more than a statistic. They’re truly miracles, and their stories, community involvement and advocacy validate and support the work being done by the Heart- Rescue Project across the country and around the world to improve outcomes from SCA.

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Reference

1. Wilder Schaaf KP, Artman LK, Peberdy MA, et al. Anxiety, depression, and PTSD following cardiac arrest: A systematic review of the literature. Resuscitation. 2013;84(7):873–877.